The Other Diagnosis-SPD

In an earlier post, I wrote about Tanner being diagnosed with General Anxiety Disorder. The other part of his diagnosis was Sensory Processing Disorder (SPD), aka Sensory Integration Disorder. 

If you're reading this blog post, you are most likely a relative or friend and you probably have a child that is my son's playmate. For Tanner's sake, I hope you will allow me to share a little bit of what I've learned and how this disorder has played into my family's life. And even if I don't know you very well, I hope you will keep reading this post because SPD is becoming more common. I hope our family's story can help you understand other children that might be struggling like Tanner. 

I knew my son was sensitive to things, but I had never really heard of this actual condition before, even with my teaching degree and years of experience with kids. So this part of the diagnosis was not expected the way I had anticipated the GAD diagnosis. I'm a little dissapointed that our pediatrician did not pick up on it sooner. One of my sisters and aunts helped nudge me in the right direction, but it took hearing the actual diagnosis to really see how Tanner has SPD. 

Unfortunately, this disorder does not have as much awareness as it needs, and let me tell you it is a BEAST of a disorder that everyone should know about. Unfortunatley, children that have SPD are often misdiagnosed as having ADD or ADHD, or they are labeled as "spoiled", "shy", "super controlling," or "out of control," and the child never really gets the help they need.  

I was told by our therapists that a lot of Tanner's anxiety is being caused by his sensory issues. Needless to say, I've been doing a lot of learning in hopes to help him! Here's my own words what I've been learning...

SPD is basically when a person has a very difficult time processing and regulating many of his 7 sensory systems. 
(Yes, instead of 5 senses, we actually have 7: Vision, Auditory, Smell, Taste, Touch, Vestibular, and Proprioception). 

As humans, we recieve and process all kinds of sensory input everyday, much of the time without even realizing it. But for a kid or adult with SPD, it is not so simple to process everyday senses. People with SPD struggle so much to stay regulated that it interferes with many and sometimes all aspects of their daily life (and the daily life of the entire family). SPD also interferes with a child's ability to learn and to be happy. 

There are two kinds of SPD: Hyper-sensitive and Hypo-sensitive.

Hyper-sensitive, meaning overly sensitive, kids are easily irritated by sensory input. They percieve sounds, sights, smells, etc. stronger than we do, and they will often cry and fight until they can get away from them. They get irritated by certain fabrics and don't like getting messy. They often hate spinning and bouncing, and may prefer to be on the ground. These kids are often mistook as being "shy", "cautious" or "lazy", but a main reason they act this way is to avoid the senses that make it hard for them to regulate their systems. 

Hypo-sensitive kids, meaning under-sensitive, cannot get enough sensory input. These children are not sensitive enough to things that they should be sensitive to. They are constantly seeking more things to touch and get into, like mud, creams, and foods- the messier the better. They never really stop moving, they can often be found jumping, spinning and climbing much more than their peers. These kids are often clumsy and do not show much pain when they have hard falls or injuries. These kids are often called "dare devil," "hyper-active" and "wild child," but a main reason they act this way is to get more sensory input in order to help regulate their systems. 

"Wait," you might say. "My kid hates getting messy!" Or "Wait. My kid is always bouncing around! Does that mean he has SPD?"

Well, keep in mind that all of us avoid or seek certain senses to help regulate our systems. It's normal for a child to hate something like tags on his shirt, or for a child to love jumping off furniture. The thing that makes a child with SPD is when there are multiple issues across multiple senses that display continual challenges for your child, and have caused you and the entire family to change their way of life.

Which is exactly what has happened to our family.

[If you want to learn more about SPD, here is one of many links that helps list signs and symptoms. I also highly recommend this book called Raising a Sensory Smart Child, which has changed the way I understand my son, as well as many of my students and even myself!]

Tanner has hyper-sensitive SPD, especially with the sense of smell, touch and proprioception. Some days, nothing bothers him and he is just as happy and go lucky as any other five-year-old kid. Other days, he is so bothered by his clothes, the cold air, the position of his hair, the glue on his fingers, etc. that every part of the day causes complete sensory overload, and he has one meltdown after the other. 

Now that I know about SPD, there are so many things about Tanner that finally make sense! All of these things that seemed so random, so picky, so annoying, so power struggling, so attention seeking, are simply happening because he is not able to process all the sensory input around him. For example, Tanner:

• Hates tags on his shirts
• We have cut almost all his tags off
• Prefers to wear pajamas and sweat pants all the time because of the feel of the fabric; Really hates jeans, tighter fitting pants, and collared shirts
• He only wears about 4 outfits. We have taken him on several shopping sprees because he gets pickier and pickier about fabrics
• Gets super moody when I cook with unusual spices
• Sometimes I avoid cooking the food I want because I don't want to endure a meltdown
• Hates getting his hands slimy or sticky; Avoids many types of snacks for this reason
• Can pick up on smells of spices from people's clothing and doesn't go near them because the smell overwhelms him
• Doesn't like touching animals and is senstive to their smells
• Prefers to wear shoes smaller than his real size because he likes the shoe being tight on his feet
• Gets easily frustrated with art projects, especially if there is not enough time and if there is glue involved
• This is the main reason we stopped signing Tanner up for the music classes I teach. He simply got too stressed with not being able to finish the musical art projects before class ended.
• Stresses out about spills or dirty spots on his clothing
• Won't walk bare foot in the grass
• Sometimes complains about the sun being too bright, even on cloudy days
• But doesn't want to wear a hat or sunglasses because it will mess up his hair. So we just talk in circles on this one instead of just going outside to play.
• Often cannot make choices with what to wear. He does okay if we are in a good routine, but if it's Super Hero Day, or if the weather changes, or if we are traveling, or if his favorite underwear is in the wash, then we are in for some panic attacks and meltdowns. Our therapist helped me understand why. Tanner finds security in knowing he is wearing proper clothes for the proper ocassion. If he is wearing what he feels are the right clothes, it helps prevent him from sensory overload. But how can he wear clothes for the proper ocassion if he doesn't know what the ocassion is or what is going to happen throughout the day? The "unkown" causes him to shut down before he can even think of what to wear. He wanders around his room saying, "I can't get dressed. What will I wear? I can't get dressed," for long periods of time, finding fault with every option I present. Bawling, kicking and screaming when we choose for him. 
• Learning this about Tanner has helped me understand myself! I'm super sensitive to temperature, and have always had a hard time with dressing for surprise activities or packing for trips. If I don't have the right item to keep me warm, then it is really hard for me to focus on anything else besides being cold. I get more irritable and not fun to be around, so it's really important that I know what activities we are doing so that I can have clothes that help me stay comfortable.
• Gets upset when his favorite meals aren't cooked the "right" way or when we have to change the menu last minute
• Last week, he had a meltdown for 45 minutes because I wasn't able to thaw the meat in time for our sloppy joes. Finally he was able to come to the table to look at the chicken I made, and about 10 minutes later, he ate a few bites.
• Has long meltdowns when any of our plans change 
• I've had to completly change the way I plan our days to help him know what we are doing, but also help him understand that it is not set in stone
• Gets upset with soggy cheerios, broken granola bars, slightly ripened bananas, etc, and refuses more and more foods that he used to like, usually because there is something wrong with the texture of the food. "I don't like how it feels in my mouth." 
• Will not get in the tub if it's just a few degrees hotter or colder than normal
• Notices that he is different than other kids at school, but not aware why. "I'm weird. I feel like a weird kid." He can't explain what he thinks is weird. I'm learning that he feels this way because he is noticing that others around him don't struggle the way he does. Super heartbreaking.
• Washes his hands too often, and does not like to put on cream to help the blisters that are caused by the handwashing.
• I have to put the cream on him while he is sleeping.
• Randomly hits us at unprovoked times. We could not figure out what was going on in his little head. But it turns out this is also a sensory thing! It has nothing to do with anger management, power struggles or seeking attention. It involves the sense of proprioception, which is how the body senses itself. He (and many kids!) hits and bites because he needs help getting more deep pressure and deep muscle work.
• Often falls to the ground and says he can't move. Again, a disregulation with the proprioceptive sense. The solution is to get him jumping on a trampoline or doing heavy work. Which is really hard to do when he is already disregulated.
• Often had tantrums during the first hour of our big parties that we hosted. I thought he was jealous of not having my attention, but now I know it is in large part because he was experiencing sensory overload. 
• I have since changed the way we do parties to help him be happy. This was really hard for me the first time around because I like to have everyone over to the house all at the same time! But it has made such a difference in the way Tanner enjoys the festivities, so it is totally worth it.
• Church is often very hard for Tanner. I have now realized it's because the different clothes and different morning routine are just the right ingredients for a rough day. Sometimes it only takes 20-30 minutes of being at church to get self-regulated. Other times, he doesn't get regulated until after church is over.

If this list hasn't convinced you that SPD can be a beast, then I should mention that part of the disorder is that the individual will have inconsistent reactions to the same things. So one day, Tanner loves the red shirt with a pocket. Then the next day, it's his greatest nemesis. One week, he loves my Tandoori chicken. The next week, he won't even come to the table because this time the same exact smell is too overwhelming. For several days in a row, making a list ahead of the day's events helps prevent meltdowns. The next day, the list is the very cause of the meltdown!

And on top of this, we have the anxiety to deal with, which makes things too complicated for me to understand.

One day, he wanted to wear his long-sleeve shirt under his t-shirt, but he knew he might get too hot, so if this happened, he planned to change in the bathroom by taking off both shirts and putting back on just the t-shirt. (Did you follow all that?) But Tanner was too afraid to wear these clothes because he didn't think the teacher would let him change in the bathroom. So he concluded that he should wear something completely different. But then he cried and screamed because in his mind he HAD to wear that shirt. 

UGH! He gets himself into these kind of conundrums ALL the time. It's been something he has suffered with since he could express his feelings as a three year old.

He's constantly fighting little battles like this within his body and head. I want so much to zap him with a magic wand, making all the worries and sensory issues go away!

If I try to help him, he quickly percieves that I am against him. Instead of the SPD or GAD being the enemy, it's me who is the enemy. Lately, I try to keep my distance from him when he struggles with getting dressed or choosing a snack because I feel like he often deals with it better when I'm not in the same room.

(A recent church activity had lots of people and an obstacle course, which was pretty nerve wrecking for Tanner. Can you see him nervous on the left, in the yellow? He was put into a group, but once he realized what was going on, he didn't want to participate. He was too afraid to just leave and come sit on my lap. He inched his way to the back of the line. At one point he had on a look of pure terror. Luckily, no one made him play, and he was able to keep his emotions together.)

Two weeks ago, we had four days in a row where Tanner could not calm down. From the point of bringing him home from school to the point of going to bed, it was constant whines, tears and yelling. We tried everything we have been learning about. Breathing. He refused. Tight hugs. Nope. Sitting with the vibrating snake. Wouldn't take it. Offering food we know he likes. Forget it. Going to his special hideaway. Not gonna happen. He ended up screaming on his bed until he didn't have energy to cry anymore and then he fell asleep. Four days. in. a. row.

At these very low points, he is so dis-regulated that he cannot be reasoned with, he cannot make choices, he cannot be motivated. He becomes a completely different person. His entire countenance changes.

It's not who he really is. 

It's not my Tanner!

Before this diagnosis, Jeremy and I were helpless because we didn't know why he was struggling so much. Now, I know why he struggles, but I often still feel helpless because the trick or tool that worked last week isn't working this week! There are so many inconsistencies!

The bad moments do end, though...

He finally settled with wearing the two shirts to school. He agreed to stand next to me while we asked his teacher if he can go to the bathroom to change. And of course, as soon as I started talking to the teacher, he chimed in to explain everything himslef, with no problem. 

There he is, my talkative, confident, articulate Tanner.

And after those four bad days in a row, we finally had a good day! Tanner found a way to be himself again. He played with his brother nicely. He got himself a snack. He tried all the new food that I made for dinner. He made jokes and danced silly dances with the rest of us. 

That's him. That's my silly, musical, creative Tanner.

The journey of battling this disorder has just barely begun for us, even though we've been dealing with it for a couple years now. I still find myself feeling a wave of emotions about this part of the diagnosis. Regrets of how I've handled his overloads in the past. The pain of witnessing his pain. The frustration of helping others understand how much this sucks for him (and us). 

Probably the most difficult has been the emotional exhaustion after trying to help him in his lowest moments. 

It's the good days and weeks (thank Heaven we have good weeks!) where I see who this child really is. My beautiful, happy Tan Man.

Jeremy and I have to hang on to these times where we can see Tanner's true self, because during the hard days, it gives us hope to fiercely fight the disorder so that our son can be happy. 

There's still so much to learn, so much I'm not good at yet with helping him. But one thing I know for sure: helping Tanner has and will be much, much easier with God's help. 

And boy, do we need His help!

Tidbits in March

Here are some little tidbits of things we enjoyed in early March.

Decorations. We got the St. Patrick's decorations up right away. Dallin helped me make this shamrock rainbow. 

Date with Dallin. One day, I got off work early. So I picked Dallin up from Daycare and took him to Grinders, the little snadwich deli in the middle of town. I figured we could kill some time getting a snack before Tanner's school let out. I didn't have any cash with me, so we couldn't buy anything (small town, local stores only accept cash or check). It was our lucky day, though, because the owner gave Dallin a cookie for free! He enjoyed every bite of it, and we had a fun time making a little date out of it.

Green Eggs and SPAM. For Dr. Seuss' birthday, the Spam Museum had a special evening Story Time. The owner from our local bookstore came all dressed up to read to the children tons of books by Dr. Seuss. Jeremy took the boys while I taught my evening family music classes. The boys wore their pj's and stayed for the full 2 hours! And the Spam Museum of course served green eggs and SPAM! 

Rain. The rains began to come right away in March! Dallin is so surprised that the rocks are burried in water. It gets really wet out in our backyard! 

Jumping in muddy puddles, just like Peppa Pig.

Yogurt. We LOVE this Greek yogurt. It is loaded with protein and has no added sugar. Dallin and I basically eat it for breakfast, lunch and dinner, haha. Also, our family has gone about a year now without any ice cream in the home. We don't need it because we have this amazing yogurt! (And no. Hormel doesn't own this product. I just genuinely love this yogurt).

The lockbox. We had to buy a lockbox to keep all of our TV remotes away from the boys- specifically away from Dallin.Fortunately, the lockbox worked wonders! The first week, Dallin tried really hard to open it and would whine about how he "needs" to watch a show. He would start playing a game, try the lockbox, then play some more. But that kid is so quick and sneaky, he started using the computer more. I would find him in the library with the door shut, watching a pbs show on the computer. Even after we deleted the bookmarks on our webpage, he could still figure out how to get shows on! So I reset the locks on our computer. For a couple days, he would sit at the keyboard trying all kinds of "passwords" to get it to open, haha. Then, he resorted to our phones. He can pick pocket us and get youtube on our phones in less than 5 seconds. The kid is cazy addicted. We have to be really vigilant to keep everything locked when it is not screen time!  

The carseat. I love it when Dal Pal falls asleep in the car while wearing this coat!

Drawing. When all the screen devices (TV, computer, tablets) aren't accessible, Tanner and Dallin work really hard on drawings and projects in the library, especially when they first wake up. They also like to work in here in the evening before bed. It is really neat to see Tanner's drawings get more and more sophisticated and to see him trying to write words and sentences. These pics are from March.

 Oh, and Jeremy was included in a feature newspaper thing!

Muscles, Valentines, Outings and More

This post features pictures that were taken the end of January and all of February. 

One morning for our project and sensory time, we made Oobleck! It is goo made with water and cornstarch. Dallin really liked it. Tanner liked using tools to manipulate the goo, but as soon as he got messy, he left the scene to wash his hands and never came back, haha. That's part of his SPD, he often has a really hard time with messy projects. Dallin got the whole table to himself!

Dallin is catching up to Tanner in shoe size. As soon as Tanner is done with his shoes, he passes them off to Dallin, and sometimes, Dallin's feet are too big for them.

I had to hold their feet still, and luckily there is almost half an inch difference. I never expected that with 22 months apart, my boys would be so close in shoe and clothing sizes. In fact, I'm positive that Dallin's hands are bigger than Tanner's. It's really strange!

We enjoyed ART night at the boys' school. Dallin nailed it with the Mona Lisa expression.

Playdo table

Painting with water colors. The boys loved the evening and could have stayed another hour.

Another evening, we enjoyed a beautiful recital in the Hormel Historic Home by some descendants of the Hormel family. Tanner really liked the guy with the guitar.

This is Mary Sue Harris, a descendant of the Hormel family, and pretty much the closest thing I'll ever get to meeting Lillian Hormel. This woman is amazing and donates large grants to the Hormel Home so that we can enjoy free concerts and music programs throughout the year. It was such an honor to meet her, I was so giddy! She played a bunch of Gershwin music for us on the piano. The boys sat through all her pieces, bouncing and tapping to the beat. I was really happy to see them enjoy the performance almost as much as I did!

Jeremy at work. Isn't he cute?

Tanner and Jeremy stuffed Tanner's sleeves to make him look super buff. Tanner wore his shirt like this for hours, it was really hilarious.

Asserting his dominance with his big muscles, haha.

Dallin tried using some old hair gel one morning before school. It was super gooey and wouldn't come out for about 3 days.

We took a family walk in the dome- a nice retreat from the coooold air.

The place lets people walk inside the dome, around the perimeter, for free.

This is me in my freaky hat, but it keeps me so SO warm!

Tanner drew this for his Daddy for Valentines day.

On the other side, he drew a picture of Jeremy holding him, and wrote "Dear dad. From Tanner. I love you." with his invented spelling. So sweet!!

In his notebook Tanner wrote a story about a mouse and a mouse trap. He sounded out the words he wanted to write, and used mostly consonants. It was so fun watching him write this. He was so focused and so proud of himself. I cheered him on. I think he got himself tuckered out because he hasn't written much since then. I bet he'll do more when he's ready.

Tanner was doodling and ended up making a silly little bird. This picture is at least 6 months old, but I wanted to make sure I got a shot of it.

We took an outing to the Spam Museum after school one day. We love this place.

This Mezclita style/flavor of SPAM is one that comes from Puerto Rico. The people there love blending it up with cheese and stuff. I've heard Jeremy talk about it a bunch from his business trips, so it was cool to see it show up on the wall of SPAM varieties that you can buy now.

It never gets old to get a picture with Sir Can-a-lot, defender of SPAM.

Jeremy gets annoyed with my efforts to save trash. I use them for instruments in my family music classes.

Dallin was really tired one evening and couldn't make it to the house door before falling asleep!

Here we are making some more Valentines. For Valentines dinner, all 4 of us exchanged cards that we had made for each other. Jeremy didn't know we were making cards for him, and we didn't know that he was making cards for us, so it was all a fun surprise, and a really sweet time to share our notes and love with each other.

Examining muscles. They think they look so grown up and strong, and I think that without their shirts, they look so little!

Playdates! We managed to do a playdate with our friend from church one day, and with a friend from Tanner's class another day.

Dallin came home with this cute project, He writes his name in almost perfect mirror image, haha.

This picture is to remember the time we ate at Burger King after Tanner's therapy session. We only went there to enjoy the play place, but after we ordered our food, we realized the play area was closed. :(

I think Tanner took this picture of his Daddy.

We tried kids yoga on youtube to help Tanner with his anxiety. It is a channel called Cosmickids, recommended by his therapist, and I love it!! The boys liked it... for about 2 days. They decided it was too much work, and Tanner hates the relaxing and breathing parts. No duh, kid, that's why we need to be doing this! Ugh, the struggle is real.

Jeremy and I enjoyed two awesome dates in February at the Hormel Historic Home. The first was a jazz swing night, where we got to dance to a live jazz band! It was really, really fun. Jeremy was a super great sport about it, and I was on cloud nine. The second date was the Foodie Throwdown, where 6 teams of chefs cooked for everyone, and we all voted on the best dishes. It was fun to have "George" and "Lillian Hormel" there! The evening was also a celebration of their 125th wedding anniversary.

I was pretty spoiled for Valentine's day!

Random picture!

Some days in February were just crazy. I came home from a meeting or something and found this. I was kind of impressed with how messy we managed to get the kitchen! It might have been because I doubled my work load in mid-January from 13 to 24 classes, or because I was called as the primary president at church, or because I was volunteering a lot with the SPAMKids Fest. 

One night while climbing on furniture, Dallin fell and hurt his eye. He still has the scar to this day that I'm making this post.

Another snow storm! I think this was the last one of the winter season. Jeremy still rode to work on his bike without any issue!

The snow was really deep and wet, and Dallin was hollering to Tanner, "I can't walk, help me, help me! It's too deep!" And Tanner came to rescue his little brother. It was really cute because they ended up falling over trying to help each other walk.

I think this is a shot at Jeremy's work.

Dance party

Jeremy snowblowed, and a few hours later, it didn't matter.

The next day he worked on the driveway some more, and got tuckered out. I had to wake him up from his nap in the snow.

One night before story time, the boys put on a little play for me. Dallin was the grandma.

Tanner loves reading non-fiction books, including this one. And yes, he wore his hair like that to school. He is very concerned about how his hair looks.

I was crazy enough to audition for a show at the community college. I got a part! I will be a "who" in Seussical the Musical. I was really hesitant to try this because so much is already going on in our lives, but I felt that if I didn't, I was missing a golden opportunity. It has been really fun practicing the songs with Tanner and Dallin, and teaching them about Dr. Seuss. They are both coming to the show this coming weekend, and I don't think I've ever been this excited to perform for someone, even though I don't have any lines or solos, I'm really excited for my boys to see this performance and to see their mommy in it!